Surviving Without Sleep, and Then With Too Much
How my diagnosis and treatment of fibromyalgia changed my self-perception
During one of the lowest moments in my year without sleep, I remember watching some silly Disney Channel sitcom where the kids were all settling in for a sleepover. They told each other good night, lay down in their bunk beds, and went to sleep.
I was so jealous.
At that time, I wasn’t sleeping at all. Instead, I was living in some weird twilight zone day and night. Words would often elude me, and minor traffic accidents were frequent. I found myself bruised from running into things. I felt incapable of initiative and different from other humans, who could close their eyes and gain the restoration brains and bodies require to survive.
My year without sleep started with my hysterectomy. It was supposed to be a minor surgery and seemed preferable to the suffering I had been enduring for several years. It was short—14 minutes flat—but the anesthesia was shorter. I woke up and tried to pull the tube out of my throat. The nurses pushed me back down, the doctor finished up the procedure, and they wheeled me into recovery fully awake. I was in so much pain I was sure I would bend the rails of the bed with my grip.
I left the hospital with a headache that wouldn’t go away and a growing inability to sleep. After a few weeks, I launched a search for answers that began with X-rays for a possible sinus infection and continued through sleep studies, full blood workups, electromyograms, and MRIs. There was one week when I had no fewer than nine separate doctor visits.
I might sometimes fall asleep quickly, but inevitably, two or three hours later, I’d blink awake.
Thank God my employer at the time was kind and humane, allowing me to work to the best of my ability even though I was nowhere near the level they had hired me at. But this year spent in and out of doctor offices without a reason for my inability to sleep was complicated by other factors. I was a single mom to a little girl, so my paycheck was absolutely necessary. I had parenting responsibilities on top of house cleaning, grocery shopping, and lawn mowing. I was in the midst of turmoil in a relationship that left my exhausted body and overwrought mind in further pain. I lay awake hour after hour, night after night. I might sometimes fall asleep quickly, but inevitably, two or three hours later, I’d blink awake and spend the rest of the dead hours running through futile techniques to get back to sleep.
I tried everything. I took warm baths and showers. I had heating pads and neck pillows, refrigerated eye pillows, and expensive bed pillows. I started shutting off the computer earlier in the evening and read books instead. I tried wine and whiskey and warm milk. Benadryl makes me hallucinate, so it was no help. I bought a sofa, which was out of my budget but much more comfortable than the lonely armchair in my living room. I kept working out, even though that may have made things worse. Meditation apps, sonic wave CDs—you name it, I was sure to try it. I could have taught a course in sleep hygiene except that I failed the ultimate test.
At a loss for answers, my doctors experimented with all manner of sleep and neurological drugs to see what might, at last, suppress the whirlwinds gusting through my being. Most only made matters worse.
It’s weird to go so long without sleep. Sure, I’d run on very little of it through college, where I graduated with a bachelor’s degree in just three years. I had even less when I took on multiple freelance clients to supplement my full-time job. And, at the time of my hysterectomy, my schedule was so jam-packed that a single flaw was cause for wrath or tears. But being weak was a whole new experience. I’d become dependent and often confused by exhaustion—and scared.
The expert I saw at the Cleveland Clinic only diagnosed “pain.” It had been a long drive and significant overnight investment with my mom to get to this esteemed physician, so after I mulled this so-called diagnosis over lunch, I called his nurse. “Pain is a symptom, not a diagnosis,” I said. “I came a long way, and so did my mom, and this is no more information than I had before.” I didn’t want to leave Cleveland without some kind of answers, but the nurse had nothing for me.
I met with a neurologist. In addition to a battery of physical tests, I underwent the test of his skepticism.
Later, I flew to the Mayo Clinic by myself to meet with a neurologist. In addition to a battery of physical tests, I underwent the test of his skepticism. He turned out to be just as dismissive as every other neurologist I’d met in the months before. It was only when the kind intern who’d been at the clinic a whole two weeks introduced the idea of fibromyalgia in a roundabout way that I finally had an inkling of a reason for the pain and sleeplessness. It was a possible cause, a light at the end of my hazy, blurry tunnel.
I took this inkling back to my doctor at home. It all fit as if the puzzle pieces were raining from the sky and dropping into the gaps. Fibromyalgia is a neurologic health condition that causes chronic pain, fatigue, memory loss, and sleep problems. Symptoms can begin with a physical trauma such as surgery. Why no one had figured it out before, I’ll chalk up to the fact that some doctors even in recent years didn’t believe fibromyalgia was a real thing. (But there was a fibromyalgia clinic at Mayo, for Pete’s sake.)
I’m not alone in spending lots of time, money, and pain in search of a fibromyalgia diagnosis. But I’m one of the few who have gotten a little better. My doctor started me on one of the approved treatment medications, Cymbalta. Gradually, over several months, I began to sleep a bit.
It was fragile and tenuous at first. I was still superstitious about my sleep and health routines. I didn’t count on the sleep to recur every night, and sometimes it didn’t. But I began to achieve longer stretches of rest. On my birthday in 2011, I even took a nap. It was the most blissful, remarkable nap of my life.
Other things improved too. The strange tremors in my hands began to subside. I started to feel as if I were looking out of my own eyes again instead of those of a stranger. External stimuli more regularly connected with internal processing. I would feel less often as if I were a surreal, vibrating vapor that skittered at the edge of flesh-and-blood people.
As I later understood, the medication took the edge off the pain that caused some of my insomnia. Time taught me other ways to manage the sleeplessness that would still interrupt my dreams. I keep Biofreeze, essential oils, arthritis gloves, Tylenol, CBD oil, and piles of Advil in my bathroom drawer. I have a heating pad and an even better bed pillow. I get massages on the regular, and I’ve added a yoga practice to my weights-and-cardio routine.
I also quit my full-time job and began freelancing from home, which let me sleep when I could, for the most part. I wasn’t much less busy; to cover Social Security taxes and my own health insurance, I was still putting in 70-80 hours a week. But, by that time, my daughter was almost old enough to get herself ready for school, so I could work for a few hours and then close my eyes again.
I don’t remember my first 12-hour night of sleep after my diagnosis, but there have been many since. And this new issue—the opposite of insomnia—unsettled my self-perception.
Being driven, perfect, impressive, accomplished: That was where I aimed my boat. I set sail every morning and rowed furiously all day every day. There wasn’t time to sleep for 12 hours. That wasn’t who I was—that isn’t who anybody over the age of 18 is, I thought. And yet it happened. How could I call myself a productive member of society, knowing that most of the world would have a half-day in before I woke?
I’m sure I’m not the only person to say I was trying to do too much before.
My sleep at night is often interrupted. I frequently wake around 4 a.m., read, check my phone, take some Advil, and watch the sunrise. But it isn’t like before, when I watched my alarm go off at 6:30 and then staggered through another day. Now, I can fall back to sleep, and I do.
I can’t decide whether I’ve recalibrated my expectations or whether I’m justifying, but I’ve started to make shorter to-do lists. I feel pretty good about the things I get done most days; it helps that I’m learning that other people feel good about getting similar amounts of things done. I’m sure I’m not the only person to say I was trying to do too much before.
Maybe the thing that motivates me most to accept the fact that I may lose half of my life to sleep is the extraordinary, primal fear that I may lose my mind if I ever spend a year without sleep again. Without that necessary refreshment, when hormone levels reset and muscles heal, when memories consolidate and cells replicate, one’s body and mind begin to fail like a car that sputters out of fuel.
The worst part of my year without sleep was the alienating sense of being outside myself, disconnected from the events around me. I felt unable to access the normalcy and ease that other people approached night with. I no longer take for granted the ability to lie down, close my eyes, and sleep. A year of unrest forced a change in my relationship with that basic human function, and I’m okay with doing less. For the rest of my life, I can accept that my time and energy are more limited than my peers. I will gratefully succumb to too much sleep.